His death came faster than she imagined.
Of course, Denise Nakakihara had understood that ALS is always fatal. When Darin, her husband, went to his doctor’s appointment for what he thought was a minor issue and instead came home with a diagnosis of Amyotrophic Lateral Sclerosis — ALS, commonly known as Lou Gehrig’s disease — the two of them clung to each other in shock and fear, crying together in their kitchen.
Soon thereafter, on April 21, 2024, Darin announced his diagnosis on Instagram. A popular teacher at Tustin High School, Darin loved teaching technology and had developed a loyal online following for his posts about digital hacks and using tech in the classroom. The smiling, joking Darin — “Mr. N,” as students called him — would always sign off with the tagline “Go find some joy.”
But, in the wake of this devastating news, the words rang differently, urgently.
Suddenly, he went viral — hundreds of thousands of people were following his social media posts, which became about documenting his journey to squeeze all the love and happiness he could out of his remaining days. “What if I told you I can’t change my diagnosis, but I can change the way I live through it?” he told followers in one post.
Fans watched as he and Denise traveled to Paris and London, and later Hawaii, on bucket-list trips. They watched as two of his daughters got married, another engaged. He spoke to his followers from his backyard with his Corgi Harlow at his side, from his favorite wine bar, Five Vines, in San Juan Capistrano.
His journey attracted the attention of Today.com and People Magazine, and he was named a Most Influential Person by the Orange County Register.
Even as the neurological disorder destroyed more and more of the motor neurons in his brain and spinal cord, first stealing his voice, then his ability to move, he used all his technological know-how to continue posting and advocating fiercely, sometimes bitterly, for more research and better — more rightly said, any — treatment for the disease.
“Today, if you get an ALS diagnosis, it’s terminal. Like, there is zero hope,” Denise says, speaking from her home in Laguna Niguel via Zoom, from the very same bedroom where Darin took his last breath on April 22, a mere two years almost to the day of his announcement on social media.
“That’s hard to fathom in today’s medical society, with how much science we have,” she says “I hope for, obviously, a cure, but also just for something that genuinely can slow down the progress and maintain quality of life for an ALS patient.”
Even knowing this, his rapid decline came as a surprise.
“There was not once that I thought we would lose Darin in such a short time. I really thought that we would have him longer,” she admits. And really, it’s easy to understand why. He was so prolific with his posts, so much of a presence; imagining all that energy could just stop is difficult for anybody to wrap their head around.
“The standard diagnosis is two to five years — and we knew that, you know?” she says, her voice catching in her throat. “So we spent a lot of time living. Doing things while he could still get out and about.”
It wasn’t until their daughter Brooklyn’s engagement party that it truly hit Denise how near the end they were. Struggling to transfer Darin into the car because he no longer has any ability to love on his own, it suddenly became obvious that just she and the home healthcare aide couldn’t provide all the support he required.
“We signed on for hospice on April 8, and it was as if his body just said, “Thank you. Thank you. I’ve done what I can. And now I … now I can go.” She wipes tears from her eyes as she talks.
***
Yet there is another dimension to ALS that people seem to forget, or don’t really think about much in the first place.
“This disease doesn’t just happen to the patient,” she says.
Denise hesitates. She says she “doesn’t want this to sound selfish.” She is quick to enumerate all the many ways she and her family were “lucky.” How she is “grateful to the core” that the Nakakiharas have a huge support network — a church community, each other, a robust GoFundMe account that helped defray the “massive expenses” of a disease “that bankrupts people.”
“What do people do if they don’t have family, if they don’t have the benefit of a GoFundMe? Because it is expensive. I mean, it is a crazy expensive disease. We have to pay for caregiving. I was super mindful to ensure that the money didn’t run out.”
The fact that insurance doesn’t cover so much of what is involved in the care of ALS patients is a particular sticking point. “It, to me, is baffling, because they cannot do anything for themselves. That’s the point it gets to. So their sheer existence requires 24-7, side-by-side support.
“I think the hard thing about ALS caregiving is that the needs of an ALS patient are so specific, and it’s so different by patient,” she explains. “And as a full-time caregiver, you become so in lockstep with their needs. It really becomes almost part of your love language together as you move throughout the day. I really felt like I became an extension of Darin’s body for him.”
In the wake of Darin’s death, only now does she realize she and her family “needed probably almost twice as much [help] as we were using.”
For the past two years, the routine went like this: A home health-care aide came to the house on weekdays so Denise could go to work. “I covered my work hours so that I could keep a roof over our head and I could keep us insured,” she says. “I knew he was cared for while I was working, but then as soon as I was done with work at 5 p.m., the caregiver left, and I was on.”
“This might sound like a weird thing to say — but I think it was a really good example for our three girls, that this is what marriage is. It is truly ‘for better, for worse, in sickness and in health.’ I think we all hope and pray that the person we say ‘I do’ to is going to be there with us through something like that, and you know really fast who’s who, and the depth of your love.
“And I have never felt more love for another human. It was a depth that I can’t even explain. I just wanted to protect him, to wrap him in a bubble, and make sure every moment was as safe as possible and that he felt as loved as possible.”
The destruction ALS wreaks on its victims never takes a day off, so neither could she.
“And that’s okay,” she insists. “Every time I felt that fatigue, that burnout, every moment that felt too hard, I would just remind myself, there’s going to come a time where I have so much time on my hands, I won’t…”
She starts to cry.
***
In May, 300 or so attended the celebration of life for Darin at Tustin High. He’d been a DJ in his younger days, and had of course put together the playlist for his own funeral. OK, so maybe Denise thought “Celebrate” by Kool & The Gang was a little much and excised that number, but the rest — the Justin Bieber, Prince, all those up-tempo tunes he loved — those stayed.
On his deathbed, Darin tasked Denise and his daughter with their own “mission” to continue forward. One of them is to maintain his “Go Find Some Joy” campaign.
“I don’t know yet quite what that looks like in the future. We will leave his site and his product line available. Friends of ours helped us create a nonprofit under the same name. I don’t know where it will go yet,” she says. “But I do know this: It is a motto that our family and our friends and our circle will forever live by. I think he imprinted that on people who will continue to look at life through the lens of not just what we can’t control, but what we can. There is joy to be found in every situation if you look hard enough. That is truly, to the very end, what he stood for — community, bringing people together and celebrating joy. I mean, he laughed until the very last moment.”
In this time of grief, she holds to that lesson. “We all have the ability to choose how we respond to what life brings our way, and even in this moment of profound sadness, I am committed to looking for the good, and to finding joy, and to not letting this tragedy define who we are as a family.”
These days, Denise has a lot of time to think about what her life will hold going forward. One thing that gives her comfort is comforting others in the struggle of ALS.
“We had so much support, and as all of that was coming our way, I just kept saying to myself, ‘Someday I will be able to pay this forward,’” she says. “It’s hard to accept all of that help. And I remember at the beginning of the journey, people told me, ‘When others want to help, just say yes. Just accept it. Allow us to help you.’ So I learned to accept it, but in the back of my head, I kept coming back to, ‘Pay this forward.’”
Now, her spare time is spent “reaching out to other caregivers that are still in it and connecting with them,” she says. “I’ve given stuff to them, I’ve offered just an ear.”
Her main advice to other caregivers going through this? “It’s so much easier said than done, but you have to find a moment for yourself,” she advises. “I was having coffee with another caregiver the other day, and I said, ‘Okay, what are you doing for you?’ And she goes, ‘I have found twice a week the ability to walk to my mailbox and back.’ And my heart just broke, because I know how hard that is, to even walk out your front door, because your person with ALS is so vulnerable every moment, and their needs are so heightened. Just walking to a mailbox and back is a luxury.”
Denise herself is still discovering how to “reset” after the past two intense years.
“For me, it’s about quiet, it’s about friends, it’s about really just taking the time to give myself the space to feel and to breathe,” she says. “And movement! That’s my secret sauce. I don’t mean moving just to be busy — I’ve always believed that walking really allows me to process. And when I’m walking by the water, it’s that smell of salt air and sand that brings me a lot of peace.”
Her companions, however, are less enthusiastic about this reset: “My poor little dogs haven’t walked in two years and they’re like, “What’s happening? We’re exhausted!”
And just like that, Denise, for the first time, laughs. Joyfully.